Voices of Recovery, Episode 15: Finding Help & Helping Others

JUL. 06, 2023

Voices of Recovery: Episode 15

Carlos Laurrari describes himself primarily as a mental health advocate. He’s pursuing a law degree at the University of Michigan and a policy degree at Harvard’s Kennedy School of Government. In the spare time he somehow still has, Carlos plays music with his band, Fogdog. Carlos also has a background as a psychiatric mental health nurse practitioner. He’s 35 now and, as he tells NAMI’s Chief Medical Officer, Dr. Ken Duckworth, a lot has changed in his world since he was first diagnosed with schizophrenia at age 23.


This conversation was part of Dr. Duckworth’s research for the book, You Are Not Alone: The NAMI Guide to Navigating Mental Health--With Advice from Experts and Wisdom from Real People and Families. Hear more episodes of this and other podcasts at nami.org/podcast.  
 

 

Episode:

 

Episode Transcript:

Dr. Ken Duckworth: [0:00] A note for our listeners ‑‑ This podcast contains discussions of suicide that some people may find difficult.

[0:07] [background music]

Dr. Duckworth: [0:08] This is "You Are Not Alone ‑‑ Voices of Recovery."

[0:10] I'm Dr. Ken Duckworth. I'm a psychiatrist and the chief medical officer for the National Alliance on Mental Illness, or NAMI. I'm the author of NAMI's first book, "You Are Not Alone ‑‑ The NAMI Guide to Navigating Mental Health ‑ With Advice from Experts and Wisdom from Real People and Families."

[0:28] I talked to over 100 people for this book. I want to share some conversations that I found truly inspirational.

[0:36] Carlos Laurrari was diagnosed with schizophrenia when he was in his early 20s. Carlos is 35 today, and is a very productive and very busy person.

[0:47] Carlos describes himself primarily as a mental health advocate. He's pursuing a law degree at the University of Michigan, Go Blue, and a policy degree at Harvard's Kennedy School of Government.

[0:59] Carlos also has a background as a psychiatric mental health nurse practitioner. There's almost nothing Carlos can't do.

[1:09] In addition to his studies, Carlos is a musician and performs with a band called Fogdog. He'll explain that intriguing name here in a minute.

[1:19] Also, a quick note, they were testing fire alarms at Carlos's apartment building when we talked. If you hear some beeping occasionally, that's why. Don't worry, it's only a test.

[1:31] Here's Carlos.

Carlos Laurrari: [1:33] I'll take it back from the beginning. As far as I can remember, one of the things I always identified with was being a good student. I always did well in school. I enjoyed it.

[1:46] I grew up the son of immigrants, as a first‑generation American. We knew that's pertinent because first‑generation Americans, and sometimes even the second‑generation before them, are at a greater risk for psychosis.

Dr. Duckworth: [2:00] Where is your family from? Where did you move to?

Carlos: [2:04] My family is from, essentially, Cuba. There's been a diaspora as far as coming from Spain, going to Cuba, then spreading around South America and North America from there.

Dr. Duckworth: [2:19] Forgive me, is this like the '60s diaspora from Cuba?

Carlos: [2:22] Yeah, correct.

Dr. Duckworth: [2:24] That was a big diaspora from Cuba.

Carlos: [2:25] Yeah, that was...

[2:27] [crosstalk]

Dr. Duckworth: [2:27] Your parents were part of that?

Carlos: [2:29] My parents were part of the very first exodus. My mother was, correct. Actually, she went to Mexico, crossed the Rio Grande at the behest of a snakehead, as they're called in some circles, and settled in Chicago and then in Florida.

[2:47] My father came a little later. His family left Cuba to Venezuela and then came to United States, and he settled here a little later. Anyway...

Dr. Duckworth: [2:55] Did they meet in Cuba and reunite in the States or did they meet in the States?

Carlos: [3:00] They met in the States.

Dr. Duckworth: [3:01] Got it.

Carlos: [3:02] I'm going to say this when I give my presentations in the context of increasing the possible risk for psychosis being a first‑generation individual or even a second generation. Nevertheless, I still had a very normal upbringing.

[3:18] I had Nintendo PlayStation, Little League Baseball, a pool. I had all the trappings of a suburban middle‑class life, so I was very privileged. One thing I know is that my parents did use corporal punishment, within the context of what's normal for their culture and time and space.

[3:37] If we think about ACEs and think about broad health promotion measures that could reduce the risk of future health issues, mental health or otherwise, then that's something to think about. Normal for the context of the generation and time, but that's the only ACE I have, fortunately, otherwise very normal and healthy upbringing.

Dr. Duckworth: [3:58] All right. Corporal punishment, but consistent with the Cuban American ethos and culture at that time. It was the same as what your friends were experiencing. Were you in a Cuban American neighborhood? Or were you not part of a Cuban American neighborhood?

Carlos: [4:19] Being from Miami, it's almost a Cuban American neighborhood in the north. That's another thing. I've always been part of the dominant majority culture in Miami, but reflecting on going to Boston and other spaces where I'm actually a minority, it's an interesting experience.

[4:36] Those [inaudible] sometimes increase the risk for mental health issues and things like that.

Dr. Duckworth: [4:41] What's that been like for you? Because you've been to Ann Arbor, you've been to Boston, you've been to the NAMI office in Virginia.

Carlos: [4:49] Well, here in Boston, it's a very global cohort, so it's pretty cool and it's very diverse and more diverse even than Miami in terms of race and ethnicity in some ways. There's a solidarity amongst all of us in this sense.

[5:00] It's really cool that everyone's trying to do something to serve the greater public here at the Kennedy School. I haven't been to Ann Arbor yet because I did my first year online, but up to...

Dr. Duckworth: [5:10] It was all virtual, so you never...

Carlos: [5:14] As far as everything in Arlington, Virginia, there's common purpose that bonds everyone. That's a very strong bonding capital that we can all put our differences aside to some degree. The differences will exist and the influence in color, everything we do in some way, but there is that common purpose that's overriding in other ways.

[5:35] Anyway, did good in school. Up until high school, I started to struggle a little bit. I became a little bit more introspective. My mom would say, "Spend more time isolating," maybe at home playing guitar by myself, some mood personality changes.

[5:52] I started to smoke pot frequently. In fact, regularly, there was experimentation with other stuff, but in retrospect, the biggest regret I have would have been in some ways smoking pot regularly.

[6:08] It was a way of, in that whole age of individuation, trying to figure out my identity with my peers and identifying with the kind of hippie subculture, if you will, and things like that.

Dr. Duckworth: [6:21] What did you experience in that regard? What did you use early? Did you use intensely?

Carlos: [6:29] Yep. All the above. I started in like ninth grade, which I think is pretty early.

Dr. Duckworth: [6:33] Pretty early.

Carlos: [6:35] I started using pretty regularly, several times a week. Not once in a while, but weekly and more often than that. Probably, in terms of...Certainly, there's been an increased trend towards more potent marijuana. I probably participated in that use as well. There was all those risk factors that lined up in retrospect.

[7:00] That's one of my regrets. If I can go back in a time machine and tell myself something, I would tell myself, "Don't smoke weed, basically. [laughs] Not until that your brain is fully developed, the very least. Even then, it's maybe not the best to begin with." Some of the association is possibly causal, according to the evidence.

[7:19] You're more aware of this than [inaudible] . Still I did pretty well in school, being that that was my comfort zone, my strength, is what I sold until today. I had been summa cum laude. I graduated summa cum laude in a high school of 900.

[7:33] I graduated in National Hispanic Scholar. I graduated with an...The best opportunity I had for college was early admissions placement into Ohio State University's medical school.

Dr. Duckworth: [7:45] Wait, right out of high school?

Carlos: [7:46] Right out of high school I had a spot in medical school as long as I followed this path called early admissions placement, where I only had to maintain a 3.2 GPA rare reasonable. I didn't have to take the MCAT. I didn't even understand how sweet the deal was in retrospect.

Dr. Duckworth: [8:02] You didn't know how good that was?

Carlos: [8:04] No.

Dr. Duckworth: [8:04] They were handing you...

Carlos: [8:05] They were putting on a silver platter for me and I had no idea whatsoever. I thought in my mind I would be an English professor. I'd wear corduroy jackets and smoke a pipe and pontificate and in the Ivy League and the...My dad had different plans for me given that I was a...He was like, "No, you're going into medicine. This is what you're going to do."

Dr. Duckworth: [8:22] Why was that? Why was that a drive that he had to?

Carlos: [8:25] He was a physician in Spain and Venezuela, and here in the States he became a nurse practitioner and PA. He always saw that as like, "This is what I want my first‑born son to do."

Dr. Duckworth: [8:39] Got it.

Carlos: [8:40] I think the combination of not having my heart in it, the onset of more serious mental health issues in my first year at Ohio State...

Dr. Duckworth: [8:48] You went to Ohio State, you decided to participate in the program?

Carlos: [8:53] Correct. That was a rough year. My GPA dropped to like a 1.8 at one semester, the lowest I've ever had. I slept in and slept 10, 12 hours a day, some days. I smoked pot regularly and frequently. I basically called my mom at the end of my freshman year and was like, "I want to come home."

[9:17] When she saw me, she saw me a little disheveled for the first time with unkempt [inaudible] and like the first inklings of a more serious issue emerging. In retrospect, it was probably some of the prodromal symptoms of schizophrenia, maybe some of the more mood or affective symptoms surfacing.

[9:35] I lacked the capacity or the...I felt like a minority for the first time in Ohio State and I lacked the network.

Dr. Duckworth: [9:41] Because Ohio State was dominant White culture?

Carlos: [9:44] Yeah, and I was coming from a dominant Latino culture. I lacked the support network or the skills to succeed at the next level at a more competitive and rigorous level. I came back home and I went to a community college, did some schoolwork there.

[10:05] Then I went away off to New College of Florida to complete my bachelor's. Things were coming along for the most part as far as like, I'm working towards a bachelor's degree. That's what I needed to be doing at that age. That's when, early in my senior year, the onset of the psychosis occurred.

[10:21] The way I make sense of it was, I wanted to communicate well in writing and orally, so I was studying literature, and had recently started taking some literature classes, more like religious classes. I started taking Eastern Buddhist art and Jewish mysticism, and all these classes.

[10:37] It started from an interesting intellectual interest and it became pathological. It became an obsession, to the point of over‑psychosis, where I was thinking there were special messages for me in these religious texts.

[10:51] I started thinking I had angels commenting on what was going on for me, or I thought I was a prophet. There were these delusions of reference and special messages started coming through, and an obsession with religion started occurring, and to the point that it wasn't a form of social capital or social cohesion, as church or religion can be.

[11:12] It was disconnecting me and isolating me from my peers because of the extreme to which I was obsessing with this, so to speak. There was other features of the illness. There was, in taking care of my basic needs, in terms of hygiene...

Dr. Duckworth: [11:27] You're not living at home at this point, right?

Carlos: [11:29] Nope. I'm at college, away [inaudible] .

Dr. Duckworth: [11:31] You're at college, right?

Carlos: [11:32] I'm having very little contact with my family, which was an issue of course because they don't know what's going on. I'm deteriorating, I'm starting to neglect my hygiene. At some points, I'm eating out of trash cans on campus, at some points I'm smoking cigarette butts off the ground. I'm quickly deteriorating into the actions of what a homeless person would do, unfortunately.

[11:56] Of course, by this time my academic performance suffered as well, of course. Fortunately, I had a family friend who I had known since middle school, who went to the same college as me, New College. She knew that something was going on that wasn't substance issues or normal stress or pressure from graduating and doing a senior thesis and figuring out what the next step in your life is.

[12:21] She called my mom and told my mom what was going on. She said, "You should probably talk to Carlos." I talked to my mom, and then within a couple days or the next day, my mother came to campus.

[12:31] We sat down ‑‑ my mother, myself, and my academic advisor, Dr. Clark. Dr. Clark said, "Carlos, you're an adult..." you may have heard this joke, or this story, "You're an adult, you have the right to privacy. I don't have to share anything that's happened to you on campus." I said, "With all due respect, Dr. Clark, I have a Cuban mother. I've never had the right to privacy."

Dr. Duckworth: [12:47] [laughs]

Carlos: [12:49] That was a rare moment of lucidity in the psychosis. Otherwise, I was pretty gone by then.

Dr. Duckworth: [12:54] Also hilarious. Now, did you invent that or is that a trope within the Cuban community?

Carlos: [13:00] I think I said that, I legitimately said.

Dr. Duckworth: [13:01] It's like a very clever...

Carlos: [13:04] There's periods of insight that occur. The fog doesn't just settle in intensely. It waxes and wanes. My mom will say, "There's periods where I saw the real Carlos come back for a few days or hours. Then the psychosis would settle and he would be inappropriate and not make sense."

Dr. Duckworth: [13:20] Tell us about the name of your band and what that means. I was quite moved by that.

Carlos: [13:25] The definition of fogdog is the light that breaks through the fog bank. The purpose of our music and storytelling is to shed that light and hope through other people's adversities and circumstances. That's part of the mission, so to speak, with my music with my best buddy, who also has lived experience. I'm happy to talk too much about that as well.

Dr. Duckworth: [13:50] Was that a moment of fogdog when you tell the joke?

Carlos: [13:55] It is.

Dr. Duckworth: [13:55] It's because you're having a psychosis experience, but then there's this beautiful, brilliant lucidity for a moment, which is at once playful, it's loving, your mother's there to care for you and you plant with that. It's incredible. You remember that so well.

Carlos: [14:16] Yep, my mom hasn't let me live that one down. It did highlight an issue, because we have FERPA, we have HIPPA, we have these long [inaudible] , but sometimes when the operationalize, even though they have the best intentions, they can sometimes interfere with people getting care.

[14:33] I may have delayed care for who knows how long if I had said, "You know, you're right. I don't want to talk about what's happening with my academic performance, my health." It was like a little ray of light that shined through in that moment. From there, we began the process of getting care.

[14:54] It was complicated. It was a source of contention in my family. My father, in his machismo, even though he was a physician, thought nothing was wrong with me. There's obviously high expressed emotion going on in the family during this dynamic at this time. Brothers are cutting short vacations because it gets antagonistic. You're sick and you need help that's being thrown around, and in the fog of it.

[15:21] I have very little insight as far as what's going on. There were moments earlier on where I had self‑awareness. That's the thing, the fog rolls in, it doesn't just settle all at once. I knew at college that I should be doing my homework, and I'm struggling with this. I should be sleeping and I'm not sleeping, and I'm feeling more anxious.

[15:37] I went to see the school psychologist in New College at the time, but we failed to identify and intervene. There was no tools, there was no formal scales, it was just a conversation. It led to nowhere, and the fog further settled in.

[15:54] It was due to that kind of informal intervention I had with a family friend, even though I had tried to access the healthcare services on my own, that led to the recovery.

Dr. Duckworth: [16:03] You had an awareness that a fog was descending. A little mist perhaps, but you can't see it. Is there a period of time that you don't have insight into any of it?

Carlos: [16:16] Absolutely.

Dr. Duckworth: [16:18] Because now, you're about the most articulate person I've ever talked to.

Carlos: [16:23] No, no.

Dr. Duckworth: [16:24] No, but seriously. Something, that process, so you don't have any on this process, then you have an awareness that a fog is arriving. It's a little misty, and then you can see it, you try to get help. You can't find help through the system, they don't know what to do. Your friend loves you into a family counselor communication, and that's when...

Carlos: [16:49] Exactly. What I say is, the psychotic break is a misnomer, whatever it is called, you know what I mean.

Dr. Duckworth: [16:55] Misnomer, yeah.

Carlos: [16:55] Misnomer. People think it just happens one day after ‑‑ just a sudden, clean break ‑‑ you've had a traumatic experience. It's much more of an assiduous process.

Dr. Duckworth: [17:05] Your fog metaphor is the most brilliant description I've ever heard, because everybody knows what that is. Everybody's been like, "It's a little misty. It's not quite rainy. What's going on?" and then before you know it, you might not be able to see the car in front of you. Everybody's had that experience, and it's a beautiful description.

[17:28] Is there a period of time...You start to get help as a result of sharing with your mother, there's tension with your siblings, vacations are being cut short. What is your experience at this point? What do you know and what don't you know?

Carlos: [17:43] This is the summer that I left college, and there's all these dynamics going on with my family. For the most part, 90 percent of the time, my life is objectively deteriorating. I'm being asked to leave campus. My girlfriend's dumping me.

[18:02] I can't hold a basic job waiting tables for two weeks before they figure out something is off with me and they ask me to leave. All these milestones of adulthood are starting to slip between my fingers. For the most part, I think I'm fine.

[18:19] There's this lack of insight, but punctuated with moments of insight, which are absolutely terrifying because when you are fully aware that you're losing your mind and everything that comes with it, your sense of identity, your sense of relation to the world around you, everything you love, the people, the places, and you're starting to get a sense of loss for that, it's a terrifying experience.

[18:39] It's really hard to fully articulate. There are moments where I'm realizing something is profoundly wrong. It's absolutely terrifying.

[18:50] Then, in one of my presentations, I share it as a metaphor like a constellation of experiences that are hard to fully articulate, hard to make sense of. There's moments of absolute terror, psychosis and the sense of you losing your mind. The awareness you're losing your mind is terrifying.

[19:08] Then, there's moments of your experience in the profound. You think that the universe is giving you special messages, that you are a prophet, you have a communion with God directly, and you're experiencing in your mind or potentially spiritual experiences.

[19:23] Then, there's the trauma that is causing your family. Then, there's sometimes the absurdity of it, which is humorous. One day, I decided to walk around wearing a cup on my head for no reason. My family had to take a picture of me and laugh because I was walking around with a coffee cup of my head.

[19:39] There's moments that are absurd. They don't seem to have sense or reason. Sometimes, you have to find the humor in it to some degree because otherwise, all you're left is with the tragedy of it. More often than not, it's quite tragically traumatic.

[19:54] What was going on for me at that time was more often than not a lack of self‑awareness and insight, as we would say according to medical model, but it punctuated moments of awareness that something was wrong and that it was terribly wrong.

[20:09] If you ask me to get help...We went to see a bunch of mental health professionals. We saw ultimately a dozen or so. We saw a psychologist who did biofeedback who said early on, "I'm woefully unequipped for this. He needs a psychiatrist."

[20:23] We saw a psychiatrist who was in his machismo and toxic masculinity said, "All he needs is to [indecipherable] ," which means cut cane, which is equivalent to saying, "All he needs is hard labor." That was his professional opinion, and he dismissed me soon there afterwards.

Dr. Duckworth: [20:40] Is this a Cuban psychiatrist?

Carlos: [20:43] Yep, exactly.

Dr. Duckworth: [20:45] You actually found somebody who understood the culture that you grew up.

Carlos: [20:49] Ironically, succumbed to the issues that parade in the cultural masculinity. We kept seeing some other mental professionals. I got a diagnosis of schizoid and schizotypal. I don't remember exactly which one, but one of those spectrum.

[21:09] Then, we had a family friend here. We have a family friend who we call St. Joe because he's like the superhero that whenever there's a health issue, we come to his rescue.

[21:19] He's chair of, I think, Pediatric Psychopharmacology at Boston Children's Hospital. He's brilliant. He went to John Hopkins, he's residency at Stanford, teaches here at Harvard, but he's St. Joe to us and the family. That's how we know him.

[21:30] My mom said, "Something is going on with Tino," which is my nickname in the family. He asked a couple questions, three pointy questions. One of them was, "How is his hygiene?" She was like, "Oh, he's neglecting it." "Is he using marijuana?" She's like, "I think he's still using marijuana occasionally."

[21:51] The other question was, I think it might have been, "How is his guitar playing?" Interestingly in retrospect, I think that the guitar playing mirrored my mental state. I would play music, but I get stuck on a chord. It lacked rhythm. It lacked harmony. It lacked the things that make music makes sense.

[22:12] Just like my mind was starting to like things that made it made sense in the way I talked when I talked to him [inaudible] , or I had with associations, my music also reflected that. I played one chord for hours and hours. I play progressions, and I never had a sequence to them.

[22:26] He said, "OK. I think this is what's going on, but do your due diligence. You should see Charles Nemeroff, the Chair of Psychiatry at University of Miami. I'll help you get connected to him."

[22:37] Then, we saw Dr. Nemeroff and maybe half a dozen other psychologists and psychiatrists in an interdisciplinary setting at a research center.

[22:48] I remember very vividly Dr. Nemeroff on his leather sofa in the corner office asked me, "Do you think that there are special messages in the radio for you?" Asking those questions. I just shy of my 23rd, 22nd birthday, or something like that, I was given the diagnosis of adult‑onset schizophrenia.

[23:13] Up until that time, I had been getting worse and worse. I had been going out for runs at 1:00 or 2:00 in the morning, and I'd been laughing maniacally and crying while I ran down the street. I thought the trees or the houses were ominous forces that were out to cause me harm. I thought they were branding or images like any branding was trying to control my mind.

[23:43] All this psychotic thinking was occurring. At one point, it was getting worse and worse, and my mother basically told the team at UM, "My son's getting essentially belligerent. If he does something that hurts himself or somebody else, I'm going to hold you accountable."

[23:57] Sure enough, the next day is when we got the diagnosis. She took a little advocacy on her part to get the...Because they were taking their time with it. It had been several months, three, four months to get a diagnosis. Ultimately, we did get that diagnosis. With that, came access to medication, and up until...

Dr. Duckworth: [24:15] What was your experience of getting that diagnosis?

Carlos: [24:19] I remember most vividly meeting with one of the psychiatrists who diagnosed me. I remember asking him, "What does this mean? Am I going to still...?" I still have some goals for myself. Even at that time in my lucidity, I still wanted to go to graduate school or professional school. People, young people especially, still have these goals even when they go through psychotic experiences.

[24:38] I was very fortunate that he was a proponent of the recovery model. He said, "We don't know for sure, but it's up to you partially what happens next and something to that extent, but we do know that medication may help you achieve your goals." Those aren't exact words. I'm paraphrasing.

Dr. Duckworth: [24:55] That was very hopeful.

Carlos: [25:00] It wasn't like this is a death sentence. I'm very fortunate. It wasn't like Elyn Saks says she was told she's got to be a cashier, basically. It wasn't like that. It was more consistent with the recovery model of, "Well, we can't say for certain, but we know this is going to possibly help is taking medication and avoiding risk factors like marijuana and things like that."

[25:21] That was coupled with early on once I had medication, I start taking risperidone three milligrams, which is a bit...It was a little on the heavier side. It sedated me, and it caused some of the few side effects. I'm on a much lower maintenance dosage these days.

[25:40] With that medication, came self‑awareness about two or three months later. It almost felt like a light bulb went off. I was in my office with my mom, and I said, "Mom I don't want to take these meds. They're making me gain weight. They're making me tired."

[25:52] She said, "I started grieving for you. I've started grieving to loss of my son. If you're not going to take these medications, then I can't have you at home because it's destroying our lives."

[26:01] That's not an evidence‑based practice. It's not the best practice by any measures, but I had enough insight to realize, "Well, I need to take my meds then because I have a home, I have food, I have shelter, I have my basic needs." Then, I'm starting to realize that I can't meet any of those needs on my own.

[26:17] Then, with that awareness that came with medication, also came a desire to do what I always do, which was read a lot. I started to educate myself as much as I could. I read what I consider the canon of mental health literature. I read "Crazy" by Peter Earley, "The Center Cannot Hold" by Elyn Saks, "Surviving Schizophrenia" by E. Fuller Torrey.

[26:40] I would get on Amazon and order books on mental health. Within a few months, I had read enough to know, "OK, this is serious. This is chronic. This is going to require lifelong medication. This is going to require altering my lifestyle. Partying or using substances is not going to be part of the equation sooner."

[27:01] With time, I've come to realize that it almost requires a hermetic lifestyle. I'm in bed by 10:30. The extent of my excitement is, I don't know, a glass of wine every blue moon with my partner or something like that. It's a very straight and narrow path you have to walk on to stay sane and healthy, and that's fine. It also let me be very productive and healthy.

[27:28] Fast forward a couple of months later, I am involved with NAMI. I go to a NAMI support group at the...

Dr. Duckworth: [27:35] How do you find NAMI? Was that...?

Carlos: [27:39] My mother says...She's doing diligence. She says, "You should go to the support group." I go to the support group, and I go to the wrong one. I go to the family support group.

[27:47] After I sit in quietly in the corner, and I hear everyone talking share their story. Afterwards, I say, "My name is Carlos. Can I share my story? I know about the wrong group, but I've been diagnosed schizophrenia, and I'm trying to learn to live and make sense of this experience."

[28:00] There, I quickly meet this powerhouse of a figure. She used to be in the South Florida community, Judith Robinson. I don't know if you've ever heard of her.

Dr. Duckworth: [28:10] Yes, I have.

Carlos: [28:12] At the time [laughs] there was no NAMI Miami, there was just Judith Robinson. She was NAMI for a number of years in Miami. When everything else fell through the cracks, you'd call Judith Robinson. When everyone slipped through the cracks, they would come to her. She had 50 years of caring for her adult son with schizophrenia.

[28:30] She was a firecracker of a person. She had this Vaudeville character to her because she was trained in theater, so she's a very compelling speaker. She would just be like, "How do you like them apples?" when she was talking about mental health.

Dr. Duckworth: [28:41] [laughs]

Carlos: [28:41] She was a character. She took me under her wing. She encouraged me to go to support groups, in some ways, encouraged me to facilitate support groups. I started going to the board meetings just as an observer, and then ultimately joined the local NAMI Miami board.

[29:01] Along the same time, I was looking for professional work. That's where my community, the NAMI community, plugged me into a [inaudible] jail diversion program. That was my first real job on my feet. I had been waiting some tables and doing some things like that, which, nothing wrong with that, but my first professional job, so to speak.

Dr. Duckworth: [29:19] What did you do there? Were you the peer connection person?

Carlos: [29:22] I was doing the...They offered me the peer job, but my mom was like, "Hold out to get a better offer." Sometimes she has good wisdom with regards to...She's like, "I don't want you on the streets, I want you to be behind a desk job," you know what I mean? She's a little protective of me.

[29:40] The second offer was a disability benefits job. My job was to do disability work, bring in the Federal dollars, [inaudible] a community‑based treatment, so forth, and so on. Insurance, medication, treatment. I remember being at the employment table and they were, "This is great that you have a bachelor's degree and you can communicate well, but we want you to know about your lived experience."

[30:04] To be at an employment setting where they saw lived experience as a value‑add and asset was very years ahead, very progressive. I worked for them for a year or so and decided I enjoyed the work, I enjoyed the working population, but I wanted to keep going.

Dr. Duckworth: [30:18] Were you ever in the hospital? Were you ever in a crisis?

Carlos: [30:23] Nope. I'm very fortunate in that sense. When I talk about my story from a macro perspective, I focus on three NAMI policies, which are, having access to health insurance...I was covered because of the Affordable Care Act extending coverage to adult children. I was 22, 23, so that provided my health insurance.

[30:42] I had an early intervention. It was maybe a year between the onset of psychosis and access to medication, when we know sometimes the literature refers to it as six, seven, eight years or longer.

Dr. Duckworth: [30:50] Eight years.

Carlos: [30:50] Community‑based treatment. Again, I didn't see a cop car, no crisis unit. I saw professionals in the community setting and, ultimately, was able to stay in the community. Very early on, was encouraged by my dad and others to get back to school, just to get in school, get back into something quickly, even if you didn't have an exact focus on where you wanted to go in the long term.

Dr. Duckworth: [31:13] Get into a role. This is where a hint of the machismo may be helpful, as I hear it.

Carlos: [31:19] It was, yep.

Dr. Duckworth: [31:19] Have a role, don't fall into the sick role.

Carlos: [31:22] No, my dad was like, "I'm not going to have you sit at home smoking cigarettes, talking to the TV all day." He literally took me by the hand and enrolled me into community college again. That push, that nudge to get out, the strong nudge to get back into the community, get into a role rather quickly, was for the good.

[31:37] I did a paralegal degree. I never became a paralegal, but I did something. I had something to show for the first year or two of my psychotic experience. It forced me to navigate my illness in the community, on public transportation, in the classroom, and not just in the comfort of my home all day long.

Dr. Duckworth: [31:53] We have a lot of horsepower. You're really bright. It sounds like you were able to function. Were you having symptoms of psychosis while in community college, getting your paralegal degree?

Carlos: [32:08] Yeah, because I still...there was like a semester where...so I finished my fall semester at New College, I had a summer off and I'm not on medication. I go into the fall...sorry, I finished the spring semester, then I have a summer off, I go into the fall semester, and it was a winter that I got medication. During that fall semester of community college, I was off meds.

[32:27] There was times where the professor would be like, "OK, I'm going to assign you to do this legal research product," and in my mind that research took on something almost grandiose. I was like, "Oh my God, I'm being asked to research the value of this art painting, and it's millions of dollars." It took on a significance that made it so much more intense. It's hard to fully articulate.

Dr. Duckworth: [32:45] You were misinterpreting. Now, why were you off the meds?

Carlos: [32:49] We didn't get the diagnosis yet by that point.

Dr. Duckworth: [32:51] Got it. This is the three to four months when your mother says, "Hey guys, you need a diagnosis." This is part of that delay.

Carlos: [32:59] I remember, I had to leave class in a hurry and someone was like, "I saw you run out when the class was going on," and I just shared over cigarette, "I can't take any class, it's intense. It seems like people are..." It felt like I was in a game show sometimes. It felt like people were laughing or talking about me. Everything takes on a strange, alternate universe sometimes.

[33:19] Fast forward back to where we were with the jail diversion program, we were talking about...

Dr. Duckworth: [33:26] You were about to decide whether to do the cushy couch clinical thing, or the disability law justice angle.

Carlos: [33:34] That's right. It was a bad time in the legal market, it was 2008 or 2009. The only lawyer I had in my family was like, "Dude, do medicine, don't do law."

Dr. Duckworth: [33:46] [laughs]

Carlos: [33:48] There's no money in mental health law. If there was money in mental health law, there would be lawyers in it, but there's no money in it," so I was like, "OK."

[33:55] I went to nursing school with the aspiration of becoming a nurse practitioner. I did an accelerated program, did the nurse practitioner program at the University of Miami, and then have worked the past couple of years in a variety of roles ‑‑ a little clinical research, a little teaching at UM and community college ‑‑ but mostly direct patient care and in person, face‑to‑face, in South Florida.

[34:15] A lot of it is geriatric, because it South Florida. I also do telehealth, where I see the [indecipherable] children and adolescent adults, and I provide telehealth service in Washington state, in rural Washington. A lot of it's bilingual. I started doing telehealth even before COVID occurred, so I was positioned very well, fortunately, for COVID. I've enjoyed, I love the direct work. It keeps things real.

Dr. Duckworth: [34:42] You mentioned the word relationship earlier. Do you want to talk about your relationship life, and how that's just been part of your recovery experience, or you want to skip over that?

Carlos: [34:53] No, that's fine. I borrow from Ellen Sax. She quotes Sigmund Freud, and any talk about mental health, you have to talk about Sigmund Freud. He's the grandfather...

Dr. Duckworth: [35:03] Sooner or later you've got to deal with him.

Carlos: [35:05] [laughs] Yeah. She said, "Work and love are the cornerstones of our humanity. That's what all people want, including people with serious mental illness." I haven't found a better way to describe it yet.

[35:18] It took me a while to open up to being loved again. For a number of years, it was just survival. It was just learning how to survive with the serious mental illness. Not thriving, not flourishing, but just survival. Unfortunately, not in terms of my basic needs, but in terms of learning how to function again and things like that.

[35:38] Then, when I was ready to date, I started dating again. This is more in the realm of intimate relationships, but I met someone I've been dating for five years now, and she is a resident.

[35:51] She's choosing to do psychiatry because I guess after dating me for five years she basically had done a psychiatry residency, so she's like, "I'm already qualified. I might as well get the formal title or certification."

[36:03] In addition to that, I have a very good network of friends and family. I'm very fortunate. That's definitely one of the things that is one of my protective factors. I've had friends that have stuck through me through thick and thin.

[36:19] My best buddy, he asked if I didn't speak about him, who's also the co‑songwriter in my...

[36:26] [crosstalk]

Carlos: [36:28] he has lived experience as well and had the same experience happen to him.

[36:34] When I met, it was arranged by his mother to meet. I was working at waiting tables at a New York Style Deli, and she nudged him with a tuna sandwich or some food nudge.

[36:48] He came in and she said, "This is Carlos. Look at him, he's working. He's got to some of the same things you're working. You guys should hit it off." We both realized we were musicians, so we started bonding over music. Then more importantly, we mutually became peer support for each other.

[37:03] I encouraged him to go down this path, so to speak as well. He's doing his social work degree now at Barry and give a presentation to Barry students about his lived experience.

[37:12] He works in a harm reduction program like IDEA Exchange at University of Miami, where they provide harm reduction for people that are intravenous drug users. It's tough work for anyone.

Dr. Duckworth: [37:24] Very tough work.

Carlos: [37:25] Especially tough [laughs] when you have a mental health issue, but...

Dr. Duckworth: [37:28] It's like your work in the prison, in the Everglades. It's deep trenches.

Carlos: [37:33] Yeah, exactly, but he's doing it. There's a sense of camaraderie there. There's only some parts of this and no one else is going to get, not even our mothers, not even our psychiatrists, unless you've lived it, you're not going to fully get it.

Dr. Duckworth: [37:50] What was that like when you go to The Deli and you realize you can help somebody? You've traveled in waters a few people understand.

Carlos: [38:01] As much as I'm helping him, I think I'm helping myself a lot by it also. It goes both ways at the end of the day. It's so rich to have someone who's...It's like brothers in arms. I don't know. There's only way to describe it except our war is not in the trenches, in the desert, it's in our minds to some degree.

[38:22] We wage it together, and there's a deep friendship that comes from that. He's my best friend. He'd be the best man at my wedding. He beat out my brothers any day of the week...

Dr. Duckworth: [38:31] [laughs]

Carlos: [38:32] and hands down. It's been a mutually beneficial relationship. It's great to mentor someone and to help someone on the ropes, but I get as much from it also. Just have someone to talk to and someone who create music with. Our art is another way of sharing our story.

Dr. Duckworth: [38:51] It's another vehicle. You're an amazing person, Carlos. It's been a privilege to talk to you. I want you to know that. I think you offer so much. You have learned so much. Let's talk about what recovery means to you or your definition of recovery.

Carlos: [39:08] It's a tough question. For me, recovery meant early on getting back to school because that was the thing I had most on my mind when I was going through finishing undergrad was figuring out going to graduate school and professional school.

[39:21] It's meant not necessarily achieving all the milestones at the same time like living independently, in personal relationships, working, or going to school, but achieving them at the right time in terms of maybe one at a time. As Joe said, "You can get there, but maybe you need more steps along the way or you need a little more time."

[39:42] I wasn't involved in personal relationships for a number of years because I had to focus on being able to function, go to school, and stuff. Sure, I lived at home longer than I anticipated.

[39:58] I live independently now, I have a long‑term relationship now, and I work and go to school. I got there. I'm a late bloomer. It took me a couple more years than I would have had if I hadn't had schizophrenia. The realization that it may take you more time or you may achieve these miles...

[40:12] For some people, recovery isn't checking up all those buckets or those boxes. Maybe you work but you live with family, or you don't work, you have financial benefits to help you, but you live independently.

[40:29] I know someone, I don't know, Akash who's brilliant who has...He's also has lived experience. He can't hold down to work for some reason, but he made millions of dollars in finance and tech...

[40:41] [background music]

Carlos: [40:41] He lives independently, he does all these things, and he's a genius multi‑millionaire schizophrenic.

[40:49] Recovery for him isn't working. It's living independently and doing philanthropy. That's what he's dedicated because he has so much money that he can donate. That's crazy. Recovery...

Dr. Duckworth: [40:58] People are amazing.

Carlos: [41:00] People are amazing, exactly.

Dr. Duckworth: [41:01] Amazing. I want to say new Carlos are very amazing, and I would want to thank you. It was privileged to talk to you, learn from you, and gather your experience.

Dr. Duckworth: [41:18] This has been You Are Not Alone, Voices of Recovery. For more episodes of this and other NAMI podcasts, visit nami.org/podcast or check wherever you get your podcasts.

[41:30] For more information on our book "You Are Not Alone," visit nami.org/youarenotalonebook. Real people sharing what they have learned to help you is the point of this book. I also got America's leading research experts to answer common questions that I am faced as the chief medical officer. The synthesis is the essence of our book.

[41:56] This podcast was produced by John Moe and Jordan Miller for the National Alliance on Mental Illness. We get engineering help from Jordan Miller. I'm Dr. Ken Duckworth, and thank you for listening.

[42:06] [music]

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